if only i knew what i was doing…

I keep realising that the spaces between me writing and posting and me not writing and posting are getting longer and longer. If I’m honest, it’s because I haven’t had any good news lately, and hate being the bearer of bad. And also, I have no idea who in my actual social circle reads this thing and there are some things that I guess are too personal to put on here, too private for work colleagues, or people I only know in passing. Strangers, I’m completely fine with, for some reason. I’ll tell them anything. It’s fine. I don’t know why.

I’m writing this on an iPad I bought three, maybe four weeks ago. Years and years of resistance, and one day I just realised I wanted one. Or could do with one. Maybe something to do with not being able to carry my old laptop anymore and still wanting to be able to write. I thought I would be doing Nanowrimo again this year. This would have come in handy I suppose. But no. I decided I needed my time more than 50,000 words this year. Last year I thought I was pushing it, but this year, my time is definitely more valuable to me.

I spend a lot of my time now in denial. Or, not really denial as such, just not thinking about my situation at all. If I’m sitting down, I feel normal. I’m not in a huge amount of pain yet. I say ‘yet’ because I’m expecting to be in a huge amount of pain at some point, maybe some point soon. The mets to my liver aren’t in retreat anymore since finishing the Rotterdam so I know I will need to deal with this at some point.

I mentioned that the hardest part about all of this lately was the feeling that I was losing my independence. Well, that has shot up by about a million levels over the summer. Winter has definitely come. I suffered from DVT in August and my legs haven’t recovered. It may be lymphodema brought on by the DVT, but my legs are useless. I can get upstairs with a struggle, but to leave the house I need a wheelchair or motor transport. I have to ask to be pushed around. I can’t go out shopping or to do any of the things I used to just take for granted. I can’t even get to my own doctors surgery on my own because the NHS provided wheelchair doesn’t have the big wheels on the side for me to propel myself. There have been times when it’s been mortifying. People not used to pushing someone around in a wheelchair don’t understand that just stopping and leaving the person in the aisle of a shop is unacceptable. Or leaving them sitting next to a bin. Or in the rain while they stand under the shelter. Or the road while they wait at a crossing. I hate it. Of everything going on at the moment, it is something I really really hate. But I suppose it’s just something else I need to get used to.

As usual I’m still trying to get more treatment. I’ll have to go to London for a consultation with a private oncoloogist to get anything more now. I’ve already mentioned the COC trial, but I think I may need sterner stuff. I’m getting my hair cut tomorrow just so I can call fate’s bluff and have someone offer me somethng that will make it all fall out again. That’s what happened last time, so definitely worth another go. Also, I’m tired of looking like a hobo without my hat on, and of wearing wigs to cover the mess that this regrowth has become.

And then I’m spending the rest of the day trying to fill out the pile of forms I urgently need to fill in. I’m rubbish at this these days, I’m lucky if I can get my name right. I’ve got to fill in forms so I can try HBOT – Hyperbaric Oxygen Therapy. The extra oxygen is supposed to give the cancer cells a hard time. And I have forms to fill in for the DWP that I can hardly get my head around, I’ve asked for extra help with those though, I’m not a fan of the DWP tricksters.

I had a good birthday earlier this month. Hooray! One good thing to report!

My situation has changed quite a lot since my posts from the beginning of the year. And not in a good way I’m afraid.

I applied for a few of the trials and heard back quite quickly in December about them, and a week or so before the Christmas holidays went in to see the trial doctors to see what they could offer me. At the time they took a few more blood tests, to see how I was doing, and to check i’d be well enough to participate in any of the trials. As it turned out, my liver was showing unusual levels and they pulled me in the next day for an emergency ultrasound.

Long story short, even though I was initially misdiagnosed by the ultrasound as having gallstones, what I actually have now are mets to my liver. This spelled the end to me being able to have any operation to remove the tumours in my pelvis, and instead I had more scans in January to determine the next course of treatment, which has turned out to be more chemotherapy.

The Rotterdam is usually used on Ovarian Cancer patients, but because of the similarities between my Adenocarcinoma and ovarian type tumours, coupled with their reluctance to re-challenge me with Taxol after my allergy to it in 2013, they decided that it may be my best shot. I’ve just had my 6th Cisplatin IV treatment, and now get a week off on no chemo meds as a break before continuing with just taking the Etoposide at home. I don’t feel great, i’m not sleeping, and my hair has nearly all but disappeared. So I hope it’s doing something to the tumours at least. I should find out in a few weeks when they get me in for another scan. Taking all this poison on faith is proving to be much harder work this time, but with it spreading I have little choice.

I’ve had to take more time off sick from work after getting back into it finally. That was a hard blow at the beginning but weeks in now and I can barely drag myself out of bed some days, so I’ve not been worrying about it as much. I’ve been given a laptop so I can log in from home, but have only used that for one of the weeks so far. I’m hoping that with the end of the Cisplatin treatments I can get to grips with how the Etoposide affects me on it’s own and think about getting back into the office. Though with weekly bloods still being demanded I might have to work from home, I think my immune system will still be heavily compromised by the Etoposide. We’ll have to see.

As well as not being able to work, I feel like I’ve had my independence taken away and that is the hardest part. It’s not like I could really go anywhere on my own with my limited mobility anyway, but now things are a lot worse. I feel very weak a lot of the time, and have had two fainting episodes while out of the house, one where an ambulance had to be called out for me. It’s made me afraid to go out on my own, and actually, to even be in the house by myself sometimes in case it happens again. I feel trapped and bored and exhausted with it all and I have no idea when I’ll be able to pull myself out from this. I’m again, hoping it’s the Cisplatin that is to blame and not the Etoposide – which I’ve been told I could be on indefinitely if it has worked.

And then to bring you right up to date, in the last couple of days I’ve started on a private trial through the Care Oncology Clinic in London after reading this article.

Again I have no idea if it will work, but it’s a chance I have to take. I’m feeling optimistic about this part of it, knowing that the side effects aren’t anything like the chemotherapy ones. Also, it’s stopped me feeling so guilty about everything I eat in regards to how much glucose it might produce because even though I’ve been trying hard to cut out sugars and carbs as much as possible, it’s really hard for me on a long term basis. And having dropped another stone in weight through this, I have to keep eating what I can these days. I think I now weigh less than I did when I was in secondary school, which is saying something. It’s scary, not having a reserve. Possibly the reason I am so bloody tired all the time too. I definitely need to get myself some recipes for high fat stuff to munch on during the day that is easy to get hold of. Making stuff is out of the question with the amount of time I can actually stand for without getting tired or dizzy for the time being. Again, hoping this goes away with the Cisplatin.

I’ve held off on posting for a while because I hate writing and sounding down. I hate bad news. I hate being a downer. But the fact is that I’ve gone from being someone with cancer that they might be able to cure, to a full-on stage 3 palliative care patient.

Usually I have the same old bunch of plans; to lose weight, to eat healthily, to give up or cut down on chocolate. To do more exercise, to make more things, to do more things. To get a new job, to make more friends, to be more social. This year, though, I’ve nothing.

Having lost around three stone (23kg) as a consequence of problems after my operation in February last year, I don’t want or need to lose any more. I’m more selective about what I consume these days, and chocolate is something that I don’t need anymore.

I can’t do exercise anymore. I get too tired too easily and walking is hard, never mind all that jumping about I used to love when I used to do Zumba every week. I’ve acknowledged that I keep buying supplies and never make anything and so I’ve stopped buying supplies. I still have ideas of things to do, but no intention of building an Etsy empire anymore. I did sew a cross stitch picture for my Sister-in-law a few days ago, but the repetition of it left me unable to use my right hand properly until today – a side effect of the chemo I had last year. And I don’t really like going out anywhere anymore.

I’m stupidly lucky to have been able to keep the job I had before all of this started. I don’t go anywhere to be able to make new friends, and I don’t have the energy to see my old friends, never mind new ones. And my social life is down to the bare minimum.

I could make my old resolutions to put a positive spin on this, but my health and pain levels dictate what I’m able to do these days more than my will power does. I have the possibility of more surgery, or more chemo, or both, or worse in the next twelve months; starting anything new would be a waste of my energy.

The only resolution I want to make is to get rid of this cancer, and it’s the only thing completely beyond my control.

I should have updated this a couple of weeks ago. Longer, really. But I’ve been busy for the last couple of months, and then, well, then there was the bad news and I didn’t much feel like writing anything at all.

I’ve been told that from my scan on 14th November, it looks like the cancer is back.

This wasn’t that much of a shock to me; I’d been tired again, I’d felt anxious about it for a few weeks too. It just hurt to hear it because everything and everyone around me had started to get on with a normal life. Including myself. We’d all sort of, put the last couple of years behind us and started to believe that this might actually be over. But, no. I’m not that lucky. Even when I lie in bed for a week chanting ‘I want to be cancer free, I want to be healthy’, as if the Universe is even listening anyway.

First thing to say is that if it’s back, it’s only small. Not properly measurable. Just back. Just there. And they don’t know how fast-growing it is. Or if any more new tumours are likely to pop up now, what with the first one emerging after over a year off from Chemo and my op in February. They (the doctors at the Christie) are going to rescan me in January and make some proper decisions then, they say. Based on growth, on what else turns up, and how healthy I am I guess.

I feel okay about it now. The results were given to me on Thursday 20th November. I cried for two days and then shook as much of it off as I could, went to a Charity Ball for Jo’s Cervical Cancer Trust, and then went back to work on the Monday as though nothing had happened. I wouldn’t say I’m in denial, it’s just, you know, I don’t know what I’m up against yet. I don’t know what exactly to worry about. How hard to worry? I don’t know what to call it. So I guess I’m just not going to worry too much until I get those scan results in February.

I’m not sitting here doing nothing.

I saw a bowel specialist at the Christie yesterday who told me the oncologist I saw last time I was there had written a letter with recommendations. Chemo, Trials, Cyberknife. The specialist I saw yesterday also offered the possibility of an operation to remove it but only if he thought he could get a clear margin, which is understandable. But also nice to hear, that he’s going to take a proper look and see if there’s anything else he can throw into the mix in my MDT. And I’ve had a letter sent out about the Trials. We found four I’m interested in initially. We’re going to keep trying on that.

So, I finally started back at work. It was a week later than planned because of a HR hiccup, but all in all the transition back has gone smoothly, with a nice graduated return for the first six weeks. I’ll be increasing my hours in November and again in December until I’m back to full time again in January. This is working out so far. This is good.

I don’t know what I expected from going back. I guess this calls for a list or two:

1) I was worried about not being able to remember things.

This isn’t proving to be that much of a problem so far, which is nice. Things have changed, processes and whatnot, but more has stayed the same than hasn’t. I’m reacquainting myself with the software apps I use, and remembering how to use it when it’s up in front of me. I’ve learnt a couple of new tricks with it too, which is always a good thing. No one is expecting me to do too much, and my colleagues are being genuinely helpful instead of making me feel bad for having to retrain me to do the job I used to do with my eyes closed.

2) I was worried about having to talk to people about being ill.

This is weird with some people but not with others. Some have asked outright how I am, expecting a real answer, not the standard “I’m good, thanks” line. I’ve had to explain to a few people that I’m taking it as it comes and though I’m good now come next month when I’ve had scans it might be a different story. I think most people think I’m cured, that I beat it. I’m carefully telling people that I’m not counting my chickens just yet, but that I’m hopeful. Talking about it isn’t making me sad, though. Or uncomfortable.

3) I was worried that people would have moved on from me.

When I came back to work after maternity leave, too many things had changed. Including the dude I used to have dinner with every day. He’d got himself a new group of dinner buddies and I had the distinct feeling I wasn’t invited to be part of it when I returned. This time it’s been different though. Nothing seems to have changed. The same conversations about the same types of things and the same people after two years. I’ve slotted straight back in again, and it’s okay. Oh, and on top of that, I had this as a welcome back when I walked through the door:

Surprise! Welcome back!

4) I was worried about the physical aspects, such as my nephs showing through my clothes.

I think I’ve managed to hide them pretty well, I mean, I don’t think half of the people even know about them. I noticed today that I had a kind of bulge where the bags were on my back before I emptied them today, but then I figured, if anyone asks me about them, I’ll tell them what it is. I don’t see why I should be ashamed of them. Yes, they hold urine. But they are there because I’ve had so much radiation that my bladder isn’t viable anymore. It’s because I almost died. It’s because I’m “hard as nails” as one friend has said. No, I don’t want them on show in the general world of the public. But they’re there. They’re doing a good job. And I realised I don’t care what people think of them.

There are things about the job that I’m sure I’m going to get tired of easily. I don’t know, I remember being annoyed a lot of the time before. But right now I think being there is good for me. It’s all about distraction; pretending I’m okay again, hoping I’m still beating the odds.

The biopsy I was worrying about came back negative for cancer cells, which is fantastic news. It means I can relax a little more. For the time being anyway. I’ve been told that I need to have an operation, the ‘diversion’ the doctors mentioned when I came round from the EUA in July. They want to swap the biateral nephrostomies with a urostomy. I panicked at first because I really don’t want to go into hospital and have to have another operation anytime soon. I asked them if it was urgent, and they said no, but that it should be done sometime in the next twelve months. They also want to make the appointment to swap out my nephrostomy tubes with new ones, I’ve had these ones in for longer than the recommended time. That will be any time in the next few weeks and I’m dreading it because I know full well it will hurt. But it’s not a full on hospital stay, so I’m okay with that.

The big news right now is that I’m going to be starting back at work next week. Yep, that’s right. Back to work. In a spur of the moment I called my manager and asked when I could come back, and went to talk to him a couple of days later – and here we are. A lot of people think I’m crazy (mostly people I work with) but I think it will do me some good. Get me out of the house. Get me active in the days. I’ll be interacting with more people, and I’ll have neutral things to think about. Things that will keep me occupied for hours without me actually having to worry about them and bring the problems home. The money will come in handy too. That goes without saying. I’m getting more excited and nervous about this as it gets closer. It’s not back to work as I knew it – it will be a long phased return, because there’s no way I could handle full time work straight away after this. And I’m worrying I’ll have forgotten too much. I’m worrying I won’t be able to concentrate enough to do the job I used to do. I’m worried I just don’t have the organisational skills to do it anymore. I’m also worried it will bore the hell out of me and I’ll regret giving up my wonderful days at home. Two years at home is a long time. I think I’ll miss having quiet time, me time.

I just think I’m trying to live a normal life again. I’ve been tagging along on more of the weekend outings instead of hiding away at home. I’ve been making the effort to see friends more than I have in a long time. And I think that going back to work is another piece of that puzzle. Another routine that needs to start back up again to make our family life more normal. I think that when I go back to work, it will be the marker that says ‘everything is okay’.

I’m under no illusions. I know that I’m not all clear, and that I probably will never be. But I’ve come this far without a new site cropping up. Six months since my operation. If I’m having scans every three or four months then I’ll be due next month or November and I’ll find out if I’m still getting away with it.

The longer I get away with it, the less chance there is of it coming back.

Wow. I hadn’t realised it had been so long since I last posted. Lots has happened. The not wearing the leg-bag thing has worked out okay for me. I have sore patches on my back from where one of my nurses didn’t dry my skin before placing the stoma bags on one time, but I’m hoping over time that can get better and heal and I won’t be all itchy forever. My energy levels are back to more or less normal. So is my eating, more or less. I still don’t eat as much as I used to, I don’t know if I ever will get back to that level – but I’m thinking maybe that’s not such a bad thing at the same time. Also, the depression I’ve been caught up in has lifted. I’ve been able to get up out of bed, I’ve been able to enjoy things again, I’ve been able to have a life again as opposed to just being alive. All good.

People are starting to treat me like a normal person again. That’s one thing I’ve noticed recently. Maybe I’m acting differently? I don’t know. Maybe I just look normal. After the op and the not eating, I ended up losing a total of 21Kg. That’s about 3st or something I think. A lot. Nothing I wore fit. Trousers would literally fall off me. Tops felt like tents. I’ve never been in that position before. It’s always been the other way for me, since I was at school. I had a fear at first that I’d start liking being stupidly thin, and that that would add to my eating disorder, but no, I like eating far too much now I’ve started to be able to again. I suspect I’ve put on some of the weight that I lost. I’m just going to have to pick up on the exercise thing if I want to carry on fitting into the new clothes I’ve had to buy the last few weeks since I realised I was wearing two sizes too big.

I’m even thinking about going back to work again now. I hated work. I probably still will when I go back and I’ll lament all of this time that I’ve had off from the place doing not a lot. At the same time, I think it’ll be good for me to get out of the house and see normal people and live normally for a while.

I’m still waiting on results. I had an Examination Under Anaesthetic last month and they took a biopsy then from my bowel. I also had a CT scan and an MRI. The two scans have come back with nothing for the oncologists to worry about, though there is some oedema in the vault left by the hysterectomy, and my bowel has drifted south and stuck itself to scar tissue. I’m waiting on the results of the biopsy, and I’m waiting for my next set of appointments to see what’s going on with the bowel specialist, but that will happen at the same MDT where they’ll discuss my poor excuse for a bladder. Since having the nephrostomies fitted, one of my ureters has, I don’t know, closed up or disappeared altogether – they couldn’t find it with their camera when they were doing the cystoscopy. The other one is okay, and I could possibly have had one neph tube removed if it wasn’t for the fact that my bladder has shrunk to tiny proportions and now only holds 90ml when full. So unless they decide to build me a new bladder from my bowels (not likely, I’m pretty sure that has been damaged by the radiotherapy too) I’m going to be stuck with the bilateral nephrostomy tubes forever. They may do a diversion and give me a urostomy, but that’s another operation and to be perfectly honest, I’m terrified of having to go back into the hospital again.

For now, I’m reasonably happy, still trying to come to terms with the schrodinger’s cat status of my cancer, of having cells that may or may not grow another tumour, but not letting it drag me under.